Jack and Rachel’s story

July’s Epilepsy Star Award has gone to Rachel Murphy for her above-and-beyond care for her son, Jack. Nineteen-year-old Jack nominated his mum for her unwavering support of him, during his journey with epilepsy. Jack says his mum advocated for him during his diagnosis, pushed for better treatment plans when they weren’t working, and has never missed a single call from him when he was away at university, even at 2am. Jack tells their story below: 

“I was a ‘normal’ 18-year-old, enjoying their first year of university. I’d gone to Bournemouth University, to study Networks and Cyber Security. I was having an amazing time, enjoying the nightlife, friendships and the independence of being away from home. Then, suddenly, I had my first seizure in March of this year. 

“I was given a very early diagnosis in May, and had a series of unpredictable seizures throughout May, June and July. It came as a huge shock to me. 

“Suddenly my world got smaller. My body wasn’t behaving the way it used to. My independence fell more by the day. My friends didn’t want to go out with me because they were scared I’d have a seizure.  

“But through all of this, my mum was there for me. She never missed a beat.” 

“Whilst I’m at university, mum is based back at home in Birmingham. Despite being 150 miles away, it felt like she was next to me every second.  

“She’d answer my calls at 2am when I couldn’t sleep from side effects. She chased up consultants for answers and called wards I was in when I couldn’t advocate for myself. She’d be on the phone to the ward before I’d even come round from a seizure. 

“I’m autistic, so I can struggle to advocate for myself sometimes, especially in unfavourable situations. She helps me to find the right words to explain how I am feeling, and she always truly understands what I mean. She is my voice when I’ve lost mine. 

“She helped me get the diagnosis I needed, questioned treatment plans when they didn’t feel quite right, pushed for my safety when I couldn’t, and asked questions no parent should ever have to ask.  

“Most of all, she believed me, at a time I felt incredibly unheard.  

“She did all of this whilst keeping our home running – she was still working, parenting my other four siblings. I know she’s worrying endlessly about me but she never lets it show. 

“I’m currently back home and her support is still unwavering. She runs to me when I drop, rides in the ambulance with me, sits by my hospital bed, and asks all the hard questions when I can’t speak.  

“She never freezes – she acts. She’s made every call, chased every answer, calmed every panic, and never once made me feel like I’m too much. 

“She’s never treated this condition as something I’m facing. She’s taking it on with me. 

“Over the last few weeks, with the help of Epilepsy Action, I’ve learnt a lot about epilepsy and that acceptance is a huge key to freedom.

“I’ve attended a New to Epilepsy Talk & Support group, and this has been so helpful. I felt so alone, but the group allowed me to express my emotions to people who have been through it before, and they answered the questions that healthcare professionals can’t answer. 

“The helpline was also really useful for when I wanted to ask a question that was on my mind, but I didn’t want to put pressure on the NHS.

“It’s still an ongoing journey for me, but it’s one I wouldn’t have been able to do without her. Her strength gave me mine. 

“If anyone deserves to be recognised as an Epilepsy Star, it’s her. She hasn’t just supported me, she carried me, when no one else did.” 

Upon accepting her award, Rachel said: “I don’t feel I deserve it because I’m doing what any parent would! When situations change, you change with your child. Whether they’re 19 days, months, or years old, that never changes.” 

Services manger at Epilepsy Action, Kathryn Hughes, said: “We’re delighted to give the July Epilepsy Star Award to Rachel – she is a fantastic mum. Having a good support network is so important for people with epilepsy, and Rachel clearly goes above and beyond for Jack.  

“It’s wonderful to hear how Epilepsy Action’s Talk and Support groups have helped Jack at the beginning of his journey with epilepsy. Our groups provide a safe space to talk to others who have been through similar experiences, and provide reassurance that you’re not alone, even during the hardest times. 

“We’re so pleased that Jack has also been able to find guidance and clarity from our helpline team. They provide a listening ear, reassurance and support as well as advice, information and signposting. 

“Thank you to Rachel, and to all those who support people with epilepsy every day. Your unwavering support and care does not go unnoticed.”